Re: Am I crazy?.....Oprah
From: Elisa (anonymous@obgyn.net)
Wed Jan 10 19:37:21 2007
Well Dear Sisters~
Where ever our loop hole is let's try to continue to work together to
find it. If you think that writing that show, just each of us as a team
is the way to go then I am for it. I know we all for 1 year to 20 years
plus have been trying to find it. I don't know what the best way is to
present our letters but if anyone is interested in proposing some ideas
that can be truly beneficial I am behind you.
I know we are all tired so when we do a campaign as such it really needs
to really make an impact. No offense to outside organizations because
without them we would not have been heard as much but we can't just put
this on them. We all need to come together somehow at one common place
that allows us to share our stories even if we can't meet physically and
get them to the right places.
I don't have those answers but I truly believe this can be done. I am
working on various disability issues on various levels and until those
continue to move forward I will keep that as my private mission for us
all.
In the meantime if there is anything that starts to move forward with
someone else out there heading up a place where we can write our stories
and the final place that we can get them too and really make a
difference, please do not hesitate to email me at
stageivplusisus@gmail.com.
You all have a wonderful night. To those other sisters who are new and
recently posted that I haven't had a chance to address. Please don't
despair
there are so many informative posts that come through here and the
sisters
are truly wonderful. Don't give up and keep searching and I promise the
answers
will come. Maybe not at that minute we want but perserverance does pay
and waiting on the sidelines without taking proactive approach to our
healthcare
can only damage our bodies. I am 42 and started this at 25 and have been
rebuilt, reconfigured physically and urologically due to this disease
and have tried everything possible to stay ahead of it. In the end all
we can do is be here for each other and count the good days we can get
out of a week as our real blessings. If we get more than that we will
take that and run with it too! It's not the end but just a new way of
dealing with this disease.
Keep posting! Thinking of you all always....
--
Elisa
At Wed, 10 Jan 2007, Katie wrote:
>
>This urks me too. I've written to Oprah several times over the past few
>years with absolutely no response. 70 million women is not enough to do
>a show on Endo to present the myths behind this disease? I just sent an
>email through oprah.com. Maybe if enough of us do...who knows?
>Having a bad night for pain,
>Katie
>
>At Wed, 10 Jan 2007, Elisa wrote:
>>
>>Dear Sisters~
>>
>>This topic is one just like D says that makes me do more than GRRRRR.
>>In 1994 I spoke with a few people who called back about my situation
>>with endo being misdiganosed at that time only 4 years and so many of
>>my organs had been removed and the Dr.'s said it was in my head.
>>
>>I wrote her when I found out at that time 5 million women had this
>>disease and I was in despair because I was single and it turned out
>>urologically it was everywhere and my right ureter was like cement.
>>If I, like all of you didn't keep pushing (which is so sad and horrible
>>when we can barely work let alone hold down a job) is the worst time to
>>be our own advocate.
>>
>>The producers from her show called back after verifying my story with
>>many who where close to me and said "This topic doesn't offer the
>>sensationalism they are seeking at this time". As you can see this many
>>years later that statement has ALWAYS stayed with me and coming from a
>>women of hardships (while I know it's not just her decision).
>>
>>I am your stageivplus women who this disease like many more sisters who
>>are
>>post hysterectomy etc. that it still wreaks havoc in my life but from a
>>different phase of it. No matter where we all are every STAGE of this
>>disease counts just as important as the first. In the end there is no
>>cure, just different and temporary ways to manage it. I can accept
>>this. What I can't accept is the numbers are rising now up to 15
>>million in 2006 and that our
>>14 year old daughters, nieces and friends who have daughters have to
>>ultimatley make a decision in time to take Lupron as well. That makes
>>me sick! If
>>this is hard for us to take how are they supposed to do that and be a
>>teen with a whole set of problems in itself?
>>
>>I think somewhere we all should come together (literally and I can't
>>stand or walk much either these days) and stand before Capitol Hill or
>>Stand united infront of a place where our faces can be seen and maybe
>>taken serious. This is just getting too out of control.
>>
>>The closest chance we have right now is with Montel. I say that because
>>I heard there was something recently where his young daughter is having
>>abdominal issues and just MAYBE this may hit close enough to home for us
>>to be heard.
>>
>>I will stand with all of you through this walk. You tell me what you
>>need and I will be there! Thanks for listening. Please don't give up
>>because you don't understand or other's do not understand. This disease
>>is real and it is happening to us. I heard this quoted recently on a
>>show and this fits perfect..."If we believe, we can achieve!" I don't
>>know how but I do believe God will grant us favor somehow and somewhere
>>when we least expect it.
>>
>>You all have a wonderful night. I believe you!
>>
>>--
>>Elisa
>>
>>At Wed, 10 Jan 2007, D wrote:
>>>
>>>This isn't the first time I've heard complaints about how Oprah totally
>>>IGNORES endo. You aren't crazy, that doctor was out of their league,
>>>and how they got on Oprah I don't even want to know.
>>>
>>>--
>>>Do you have the contact info? If I saw that show I would definitely
>>>write, and if you post it here, I will anyway!
>>>
>>>You are not nuts! and so if it isn't "uncommon" - it still isn't
>>>"normal"!! Jeebus that just makes me mad!
>>>
>>>And of course there was no mention of how motrin (especially at the
>>>doses they recommend for endo) is itself a dangerous drug - that stuff
>>>gave me ulcers.
>>>
>>>GGGRRRRRRRR!!!
>>>
>>>That doctor should have told that girl to find an endo specialist who
>>>will remove all of her endo by excision. It's a good example of how
>>>just because someone is an obgyn it doesn't mean they know diddly about
>>>endometriosis.
>>>
>>>And thanks for a chance to vent a bit - I'm on continuous BCPs, but my
>>>pain still cycles and I'm definitely "PMSing" right now. ;-)
>>>
>>>And how sad that her pain is considered an "embarassing question" - I'd
>>>really like to see people get past that kind of thinking. Endo is a
>>>serious, sometimes debilitating disease - it's nothing to be embarassed
>>>about!
>>>
>>>At Wed, 10 Jan 2007, Alyson wrote:
>>>>
>>>>OK, so I was watching an Oprah episode from earlier in the week that was
>>>>discussing embarrassing questions. She had an ObGyn from Cedar's Sinai
>>>>Hospital on and a girl was asking her about painful cramps. She
>>>>described her cramps as being so severe as to not be able to get out of
>>>>bed sometimes, vomiting, and so painful as to reduce her to tears. The
>>>>doctor responded by saying that this is not uncommon and she should use
>>>>a heating pad and take Motrin beginning two days before she expects her
>>>>period to start or go on birth control pills. No mention at all of
>>>>endo, fibroids, etc.
>>>>Now, from what I've read it is completely not normal to have such severe
>>>>cramping with your period and that kind of pain is indicative of
>>>>endometriosis or fibroids. I want to write in and pitch a fit, but am I
>>>>nuts?
>>>>Alyson
>>>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)